Forum

GP's & PPMS & NHS...

Primary progressive MS
#1

Hi gang, I had a very interesting conversation yesterday with the friend of a friend who is a doctor in California. Actually she is the Chief Medical Officer at a prison.

She said that in all her medical career… and she’s in her 40’s… she has had many patients who have been dx with RRMS but has only had one patient who was eventually dx with PPMS.

She went on to ask me what treatments I was having, and was surprised when I said there are no treatments for PPMS. She didn’t know this and she had assumed that the treatments would be the same as with RRMS.

So I suppose that’s probably about the same for all of our GP’s… they know what symptoms might be a sign of MS but beyond that they know very little (well I know we all know that… dah… but it was interesting hearing it first-hand).

Another interesting thing, my friend, who lives in California, has just been dx with breast cancer… thankfully it looks like early stage. However with the private insurance schemes they have she has to wait for about 2 months to get the insurance company to give her the go-ahead for treatment!!! AND she cannot have the consultant of her choice because he is not covered by her insurance!

Let us, one again, thank God for the NHS! (and fight like hell to keep it!)

Pat x

#2

Well said Pat. We might get frustrated with the nhs at times but we’re lucky really. I’m not surprised about doctors having little concept about PPMS. My urologist asked me to explain the differences between the different types of ms as he has quite a few ms patients but other than a basic concept of how the illness affects the urinary system he had no idea. But I’ve been a nurse for over 20 years and until they suspected me having ms I didn’t understand it either and my thoughts were a lot worse than reality. I never imagined having it and definitely never thought I’d be able to cope like I am doing.

Take care.

Cath xx

#3

Indeed. The cost of my 3 MRI scans, 2 X-Rays, and 3 Hospital appointments, if paid for privately, would have cost c. £2,300. To have the sort of insurance that would have covered this cost, would have been about £50 per month, assuming it was taken out before the age of 35. Scary, when you think about it.

#4

No, lets thank the people who work within the nhs and the people who keep it running.

(don’t want a debate so will stay anon)

#5

Don’t want to get you into a debate anon… but surely it’s the same thing? The NHS wouldn’t exist without all the people who run it and work in it.

So I think we agree… yes?

Pat x

#6

Being an atheist, I prefer to thank Labour for the NHS, but know exactly what you mean and just being picky. Thankfully, they have pledged (again) to repair the damage caused by a party that only believes in financial profit and I expect it will be a key issue in 2015.

The people who keep it running are deserving of our gratitude, despite what porkies the Minister for Murdoch likes to spread.

#7

I agree, where wouild we be without it (from my experience, there seems to be a little extra care from the GPs, not just for MS but the likelihood of PPMS, they have been extra lovely to me at the surgery and even the one GP that I really had a bad time with last year has been very helpful!)

Whammel - yep, politics! Lets just hope we keep the NHS (and reward all of those in it appropriately - that’s directed to Anon)

Sonia x

#8

The NHS is one institution where the individual constituents are better than the whole. Most of the individuals I have dealt with have been brilliant, while the system has sometimes been lacking.The exception: As a callow youth I was admitted to Chester Royal Infirmar after a car crash. The duty doctor, a surly cynical spinster type with a mouthful of cold sarcasm said to me (after being shoved prodded and shouted at in x-ray) “Here’s how to really make friends, put needles in both arms”. She learnt some new scouse expressions after such a well timed hilarious quip. Good wishes, Steve.

#9

I completely agree - we are very very lucky to have the NHS and long may it continue. I have had so much good care from the NHS throughout my life, especially since I developed PPMS. The American system makes me shudder.

One funny detail, which does not detract in any way from my admiration for the NHS: I was seeing a GP about some minor health problem unrelated to PPMS, and he had my details clearly in front of him on the screen, and he asked me: “So how are you getting on with the MS? Is it getting any better?”. I bit my tongue and said no, it’s progressive, it’s not getting better. He looked baffled. Luckily he seems to have been a locum, I’ve never seen him again since that day.

Chris

#10

I was a nurse for the nhs for a short time and they deserve medals. Won’t waffle but you need to be super human to manage to cram in what’s expected in the time you’re allocated to do it. They deserve a huge amount of respect and I’m sure the same is expected of every other department. I couldn’t manage it and in my last workplace I am remembered as someone who worked hard.

Anon, we agree.

Take care

Cath xx

#11

I agree - thank God for the NHS. Unfortunately the economy is having difficulty sustaining the expense. I can see things going the way of the states. I sincerely hope not though! Teresa xx

#12

Hello all, I live in Belgium at this time but I am an American so this whole health care business is very embarrassing for me. Just had an appointment with my Neurologist and was “officially” upgraded (or downgraded) depends on how you look at it from RR MS to Progressive. She gave me a prescription for rivotril, any suggestions on this med? Thanks, by the way, this is my first post

#13

Welcome to our little gang Wilcoxg!

Never heard of the drug… but it might go under a different name here!

Nice to see you on here… we are a small group but very supportive and friendly.

Was the RRMS a mis-diagnosis and really you are PPMS, or has your RRMS turned into Secondary Progressive? We have both PPMS and SPMS folk on here so you are in good company.

Your post might get lost on here as it’s at the end of another post. Be good to introduce yourself with a new post. Click on ‘New Thread’ and say hi.

See you again soon,

Pat x

#14

Hi Wilcoxg and a big welcome :slight_smile:

This gang saves my sanity quite regularly as it goes! And I can understand your comment about your upgrade/downgrade… I like to think we’re a bit of a rarity as it’s not the usual type… but whatever version, it still has up and downsides.

Sonia x

#15

I thought Rivotril (Clonazepam) was a drug for epilepsy, so perhaps our Belgium friends are on to something. You could do worse that take a look at the unapproved ldn and see if you think that might help.

www.ldnresearchtrust.org

#16

Hi Wilcoxg and welcome again. This group has been an enormous help to me since my recent diagnosis of PPMS. Rivotril is usually used for epilepsy, I’m not a doctor so don’t know why that was drug of choice but I do know that Gabapentin which is more commonly used in the UK can also be used for epilepsy and the logic behind it being given for nerve pain is the fact that it “settles” the nervous system down, the easiest way to describe it would be that the nerves become less agitated, the impulses less active. I wonder if that was the logic.

Good luck and yes please start a new thread and introduce yourself, it’s up to you what you want to tell us about yourself.

Cath xx

#17

Min, I started a thread called introductions, I am very new at this whole forum thing, I hope I did it correctly. I understand that rivotril is usually prescribed for epilepsy, that is why before even trying this drug I started doing the research. It really scared me reading about the addictive nature of it. Greg

#18

Greg don’t worry about addictions. I was extremely worried before I started out on the pain killers for nerve pain (morphine especially) but I’ve been reassured that I’ll be weaned off slowly and properly if the time comes that we decide to stop them. Please speak to your Neuro if you’re concerned but they really have your best interests at heart. It’s scary knowing you have this diagnosis, don’t let your treatment make it worse.

Take care, do you have MS nurses over there you could discuss this with? If not maybe just a phone call to your Neuro might help answer any questions or ease your concerns.

Cath xx

#19

Hi Greg, your new post might not have gone on because there’s been problems with spammers & it’s caused lots of problems… it might suddenly appear in a day or two!

Regarding addiction, in using drugs for medical use… and not drug abuse… there really are no worries about addiction. You will be using the drug to help your symptoms and that is a long long way from being a ‘drug addict’.

Most of the drugs we use will have withdrawel symptoms if we came off suddenly… but as Cath rightly says there is no problem as when we come of them we are weaned off properly without problems.

So don’t worry about it. If it helps your symptoms, go for it.

Pat x

#20

Just to add another ounce of reassurance, I’ve known people come off addictive medication very successfully, the doctors know how to handle this, and it’s often achieved by, for example, having the medication in fluid form and taking ever-more diluted dissolved solutions of it over a long period of time, so that the body is scarcely aware of the gradual tapering off of the dosage. In this way complete withdrawal is achieved without any difficulties or unpleasantness.

Chris